Scleroderma

[Ncoff1]

I'd like just one day where I can wake up and feel normal. So tired with painful legs and chest pains I'm fed up of being a burden 😞

[galama]

Yo are not a burden. Never think that. Try although I know its hard to be positive. I have found that my symptoms come and go. One month its painful legs and I can hardly walk let alone get up or downstairs, the next month it might be itchy skin all over. At the moment the chest pains, breathlessness and pounding heart are have their turn! A really good month is when they overlap! I dont know how long you have had this crazy roller coaster of a condition but it's taken me a long time to come to terms with it, now its just something I have learnt to live with. I determined right at the start not to let it rule me so I celebrate every single little tiny piece of normality. I can get downstairs - GREAT, I can scratch my back - GREAT, I got to the car without feeling breathless - GREAT.

I dont know if this helps but always remember this is a great forum for unloading to others who really understand. I hope you find something positive to celebrate today. Here the sun is out and I am watching the birds feeding in the garden . . . .

[AnnieMc in reply to galama]

Hi there, I completely know where your coming from, life isn't great with this condition which affects everybody differently. Every morning I dread getting up wondering what's it going to be today, not much fun when you haven't done anything and yet your already worn out. I Have had this condition for about 12yrs now but it's only been the last 4/5 years that I have had real problems and had to slow down and work within my limits. Question of the mind is willing but the body isn't. Some days will be better than others but life won't be the same again, so try and be positive and accept what it is and take each day as it comes . Wishing you all the best.

[Ncoff1 in reply to galama]

Thank you I think I'm down because I hav a two ur old and get frustrated when I can't even go fir a walk in the park

[marilynmcl in reply to Ncoff1]

Chin up pet......two year old's can be a lot of work...have a grand daughter that age next month and I know exactly how much work they are...but so much fun and cuddles too. I have a mobility scooter as I can hardly walk so I go out on this and shouldn't really carry her on my lap as I drive but she loves getting a wee ride on my scoot. So does the bigger girl of 7. I think you should just take each day as it comes and deal with any difficulties as they arise and not feel too down...you are not alone in this illness as you must know on this website here.....def. not a burden...never think that...if it were your wee girl [god forbid] that had a debilitating illness would you think her a burden? NO! So....behave yourself! And, have a word with your rheumatologist or your doctor about how you are feeling..you need watch for the insidious depression that can creep up on you!

Remember-you are not alone! Best wishes pet!

[fruitpastle in reply to galama]

Love this reply it's exactly how I feel and how I think and for me just to watch the birds in my garden makes me forget I hav any problems at all 😋

[Littleleni in reply to galama]

Great advice, I experience the same things as you and that is my way of trying to think also👩🏻‍🌾 meditation has helped me a lot too.

[titanicus]

Ncoff1. NEVER think of Yourself as a burden! Look at each day in a positive way. I have a sense of humour, and am able to laugh at My Scleroderma each day and say ' What have You got in store for Me today?' Then each day I can adapt accordingly. Depression is the real enemy and We all go through stages, Your Friends on this site are always here if You need help coping. Take Care.

[nanagill]

Hi Ncoff1 I've had sclero for 7 years and its really starting to kick in. My body thought it was up to doing lots of jobs today but come 3pm chest pain, rib cage hurts like crazy, burning pain in legs that feel like they wont support me. That'll teach me! I hope you have some help with you're little one. We're all with you in spirit darlin' as they say here in Geordie land 'gan canny'

[Thinman]

As others have said, you're not a burden. Please don't go down that rabbit hole. I'm into year 6 of my diagnosis and honestly don't know what normal is. My wife is healthy and complains of aches and pains all the time. I love her dearly and don't think of her as a burden and I know she feels the same about me.

When I am feeling down because of my symptoms I try to focus on the things I love, my family, my friends, music, etc. Really, anything but my pain. It's not a cure all but the distraction helps. There are days where I am so busy I almost forget about my disease.

[candybeagle55]

When I eat bad I hurt. I have been a binge for 6mths. they put me on steroids for hearing loss and I am constantly hungry. Going to see a nutritional dr on Thur. Hoping he can help me.

[valeview]

Im so glad I found this page I thought I was just nuts,I have been diagnoised with crest syndrome ,and theres something different every day,I get so tired pain in the legs ,chest,difficult breathing,an just no energy,I wish people would understand, Im not lazy,I just have slow days.